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Creating Excellence in Dementia Care CREATING EXCELLENCE IN DEMENTIA CARE A Research Review for Ireland's National Dementia Strategy Suzanne Cahill, Eamon O’Shea & Maria Pierce 1 CREATING EXCELLENCE IN DEMENTIA CARE A Research Review for Ireland’s National Dementia Strategy Suzanne Cahill, Eamon O’Shea & Maria Pierce DSIDC’s Living with Dementia Research Programme, School of Social Work and Social Policy, Trinity College, Dublin Irish Centre for Social Gerontology, National University of Ireland, Galway 2012 ACKNOWLEDGEMENTS ACKNOWLEDGEMENTS The authors would like to thank each of the members of the Dementia Advisory Committee for their commitment and dedication to this work and for their valuable guidance throughout all stages of the project. Special thanks 2 go to Caroline Forsyth, Research Administrator, and Vanessa Moore, Research Assistant, on the project and to the PhD students from the Living with Dementia programme who assisted us: Andrea Bobersky, Janet Convery and Ana Diaz-Ponce. We would like to thank Sheelah Connolly and Paddy Gillespie at the Irish Centre for Social Gerontology, National University of Ireland, Galway. We are very grateful to the many staff at the Department of Health, the Health Service Executive, the Dementia Services Information and Development Centre and the Alzheimer Society of Ireland and to staff in the various organisations with whom we have held discussions and who gave generously of their time and expertise. Special thanks are also due to Professor Sube Banerjee and Professor Julian Hughes. Finally, we are most grateful to The Atlantic Philanthropies, particularly to Mary Sutton for instigating this project and to Tom Costello for his ongoing encouragement and support. Photographs: The photo images on pages 45 and 125 were reproduced with the kind permission of Ken Finegan. The photo image on page 105 was reproduced with the kind permission of Mount Carmel Nursing Home, Clonakilty. FOREWORD FOREWORD The estimated cost of formal and informal care for dementia worldwide is currently in excess of 600 billion dollars accounting for 1% of the world’s gross domestic product. This cost, which will grow substantially in the years ahead, 3 is a wake up call for governments around the world prompting more and more of them to develop National Strategies for Dementia. The Irish government gave a commitment in 2010 to develop and implement a Strategy which to be effective must be based on reliable research. The purpose of this research review is to provide the data required by collating estimates of current and future prevalence rates, costs and service provision. It also reviews models of local and international best practice placing an emphasis on those which are person-centred and where the individual is treated as a full citizen with accompanying rights. The research review examines the regional prevalence of dementia in Ireland and estimates the increase in numbers over the next thirty years. This estimation of cost rightly takes both formal and informal care into account, the latter being omitted in many studies. The figures for Ireland match the costs per individual with dementia in other countries and underpin the need for a structured and cost effective approach to dementia in this country. The research review has found that good models of dementia care have been developed in Ireland over the past twenty years but that the level of care provision is very uneven throughout the country with some areas offering little or no support. The review also identifies major deficiencies in the standard of care of individuals with dementia in both acute hospital and long-stay settings. One of the few advantages for Ireland of being a comparatively latecomer in forming a National Dementia Strategy is the opportunity to learn from the achievements and failures of other countries. The evidence presented in this report will be complemented by direct consultation with individuals with dementia and their carers. This research will ultimately form the basis for the creation of a National Dementia Strategy which should be published by government as planned in 2013. Ireland, rather than lagging behind other European countries as at present, could become an international leader in this field in the years ahead going on to fulfil the aspiration of the Taoiseach, Enda Kenny, to make Ireland “a good place in which to grow old”. Associate Professor Suzanne Cahill, Professor Eamon O’Shea and Dr. Maria Pierce should be congratulated on assembling the highly relevant content of this report. The Atlantic Philanthropies should be acknowledged for having the foresight to fund the work. Professor Davis Coakley TABLE OF CONTENTS Page No ACKNOWLEDGEMENTS 2 4 FOREWORD 3 EXECUTIVE SUMMARY 11 CHAPTER 1: Introduction 17 1.1 Background 18 1.2 Perspectives on dementia 18 1.3 Perspectives on dementia care 19 1.4ऀ Dementia: globally and in Ireland 20 1.5ऀ Background to this dementia review 21 1.6ऀ Creating the evidence-based research 22 1.7ऀ Review objectives 22 1.8ऀ Methodology 22 1.8.1 Prevalence and projections of dementia 23 1.8.2 Economic and social costs of dementia 23 1.8.3 Current availability and future demand for services 24 1.8.4 Best practice in dementia care locally and internationally 24 1.9 Report structure 25 CHAPTER 2: ऀ Prevalence and projections of dementia 27 2.1ऀ Introduction 28 2.2ऀ Estimating the prevalence of dementia in Europe 28 2.3 Global estimates of dementia prevalence 30 2.4 Estimates of the prevalence of dementia in the population of Ireland 31 2.5 Younger people with dementia in Ireland 32 2.6 Prevalence of dementia in people with Down syndrome 33 2.7 New prevalence of dementia data at regional and local level in Ireland 34 2.8 Prevalence of dementia in long-stay care settings and in the community 36 2.9 Dementia prevalence in the acute sector 37 2.10 Estimates of the future population of people with dementia in Ireland 38 2.11 Limitations of projections 41 2.12 TILDA 42 2.13 Incidence of dementia in Ireland 43 2.14 Summary and conclusion 43 TABLE OF CONTENTS CHAPTER 3: ऀ The economic and social costs of dementia in Ireland 45 5 3.1 Introduction 46 3.2 Data and methodology 46 3.2.1 Resource use 47 (i) Informal care in the community 47 (ii) Formal health and social care in primary, community, acute and psychiatric settings 48 (iii) Residential Long-Stay Care 49 (iv) Premature mortality from dementia 50 3.2.2 Unit costs 50 3.2.3 Sensitivity analysis 53 3.3 Results 53 3.3.1 Informal care in the community 53 3.3.2 Formal health and social care in primary, community, acute and psychiatric settings 54 (i) Primary and community care 54 (ii) Outpatient care 55 (iii) Medications 55 (iv) Acute hospital care 56 (v) Psychiatric in-patient care 56 3.3.3 Residential long-stay care 57 3.3.4 Productivity losses associated with premature death 58 3.3.5 Total cost of dementia in Ireland 58 3.3.6 Sensitivity Analysis 59 3.4 Summary and conclusion 60 CHAPTER 4: ऀ Community-based health services for people with dementia 63 4.1 Introduction 64 4.2ऀ Government policy and the particular challenges of dementia care 64 4.3 Primary care 65 4.3.1ऀ The benefits of early diagnosis 65 4.3.2 The need for databases in primary care 66 4.3.3 The need for clinical guidelines on diagnosis 66 4.3.4 Making and disclosing a diagnosis 67 4.3.5 Communicating news of a diagnosis 67 4.3.6 The role of Memory Clinics in dementia diagnosis 68 4.3.7 Irish people’s experience of getting a diagnosis 69 4.4 Support services immediately following diagnosis 70 4.4.1 Information and support services 71 4.4.2 Counselling, rehabilitation and emotional support 72 4.5 Community nursing services 73 TABLE OF CONTENTS 4.5.1 Practice nurses 73 4.5.2 Public health nurses 74 4.5.3 Mental health nurse and old age psychiatry services 75 4.5.4 Challenges facing community nurses 75 6 4.5.5 Education and training of nurses working in the community 76 4.6 Summary and conclusion 76 CHAPTER 5: ऀ Community-based social care services for people with dementia 79 5.1 Introduction 80 5.2 Specialist versus generic community care services 80 5.3 Supports for family caregivers 81 5.4 Home care services 82 5.4.1 Irish data on home care services 83 5.5 Day care services 83 5.5.1 Data on day care services 84 5.5.2 Lessons from other countries on day care and dementia 85 5.6 Other respite care services 85 5.7 Community care for people with an intellectual disability and Alzheimer’s type dementia 86 5.8 Services at the end-stage of life 87 5.9 Other community care services 87 5.10 Summary and conclusion 89 CHAPTER 6: Services for people with dementia in acute care settings 91 6.1 Introduction 92 6.2 Detection of and assessment for dementia 92 6.3 The role of primary and community care 93 6.4 Care and outcomes for people with dementia in acute care settings 94 6.4.1 Risk of dementia for hospital patients undergoing anaesthetics 97 6.5 People with dementia and challenging behaviour 97 6.6 Staff training, education and ownership of dementia 98 6.7 Supporting family carers within acute care settings 100 6.8 End-of-life care services in general hospitals 101 6.9 Best practice 101 6.10 Approaches to hospital care for patients with dementia in other countries 102 6.11 Summary and conclusion 103 TABLE OF CONTENTS CHAPTER 7: Long-stay residential care services 105 7.1 Introduction 106 7 7.2 Long-stay facilities in Ireland 106 7.3 Admission, access and transition to long-stay facilities 107 7.4 Quality of care and designing appropriate environments for people with dementia in nursing homes 108 7.4.1 What is the evidence base
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